It has been exactly one year since I underwent surgery to remove ovarian cancer. Referred to by the indelicate term “debulking”, the operation took more than seven hours. When I came around, something was different. I would soon discover that I had a stroke during the operation, leaving me with permanent vision impairment.
For the past twelve months I have been trying to join the National Disability Insurance Scheme (NDIS). I am still not a member.
The stroke killed part of my brain. If I hold my head straight, I can see the rim of my glasses on the left, and just blackness on the right. The part of my brain that died is on the left-hand side, almost directly behind my left eye. I know the precise location because I had a second stroke two weeks later. I was not unconscious for the second one. It was excruciatingly painful.
Losing my vision on my right side has created significant challenges. I cannot drive. I struggle in busy environments, with people walking past me quickly. And, for reasons I cannot completely understand, when its dark, mobility becomes trickier. The world of blackness closes in on me. I also regularly hit my head on the right side. This happens often when I’m cleaning. I bend down to sweep, and I thump my head as I straighten up. After 47 years of perceiving the world in one way, I now perceive it very differently. The adjustment is hard.
An ophthalmologist referred me to a charity for the vision impaired. They encouraged me to apply for assistance to the NDIS, assuring me I “would be eligible”. Forms in hand, I went to my doctor. She verified my blindness. I filled out the rest.
Nevertheless, my first application was rejected. The reason given was that my vision may yet return.
Some months later, I paid to see a second, very expensive ophthalmologist, seeking tips on how I might achieve this “return of my vision”. She repeated what everybody but the bureaucrats staffing the NDIS appear to know: once part of your brain is dead, it cannot come back to life. My condition is as permanent as permanent can be.
The ophthalmologist did, however, know how to get me onto the NDIS. She and her team wrote a long, detailed, and sophisticated application. They stressed the permanency of my situation and the problems caused by my blindness. I was overjoyed. What I wanted most was a white cane. With a cane I am less likely to walk into objects. It also signals to the world that I may not be able to see them.
I was therefore shocked when I received a second rejection. Curiously, the rationale was different this time.
I have now bought myself a white cane. I used my own money and was able to do so because I am a privileged, white, well-educated woman. But the experience has left a bitter taste in my mouth. Not because I did not get what I want. But because I worry for all the people who cannot afford to buy their own cane — or much more besides — and will have to go without.
I sincerely believed that the NDIS had my back. It did not. Now I feel naïve. I feel foolish.
One of the basic principles of effective social service design is to ensure that a system is used by both the rich and the poor. The rich make sure it works well and everybody enjoys the benefits. Melbourne’s world-class tram system is a prime example. The trams are frequent and reliable and on any given morning down Collins Street, you may find a magistrate, defendant, jury member, and clerk of the court, all sharing a carriage.
Australia’s welfare-to-work system — the subject of my academic research for more than 15 years — is the polar opposite. It is a system designed only for the very poor. As a result, people on the dole routinely report feeling as though they are treated with disdain.
I am now in contact with a charity advocating for people who have been rejected by the NDIS. Apparently, if my right-side vision loss had been due to a problem with my right eye — such as macular degeneration — I would most likely have made the NDIS cut. Because it is due to an acquired brain injury, I do not. I fear that such bureaucratic hair-splitting is our NDIS future. If I am correct, yet again it will be the vulnerable who pay the heaviest price.
Siobhan O’Sullivan is Associate Professor in the School of Social Sciences at the University of New South Wales. She is the author of Animals, Equality and Democracy.